The Really Hard Stuff

I think this one needs a disclaimer. For real.. this is pure emotion, fueled by exhaustion, in one of the worst situations you could find yourself in. You may want to skip this one, unless you really want to know what seeing Kilian after surgery feels like. This is the really hard stuff.

We've almost been up for 24 hours. Almost home. It's raining so hard.

We waited for what seemed like forever to see Kilian in his room. I started to get that feeling, something wasn't right..and my heart stopped when I heard someone coming to us.

We could go see him now.

We jumped up, so anxious to just get to him. I had to go to the bathroom, had to pump, just wanted to sit with him for a while before we headed home.

We walked into his room and I went right to him. The new machines didn't phase me, my focus was just on getting to that little boy. We had just seen him about an hour and a half ago, and he didn't look as bad as I thought he would. I was shocked when I got to his bed.

I am not a person to buckle under pressure. If anything it makes me stand taller. Tell me I can't, and I will. Sound familiar? But when I saw my baby, I felt my legs go numb.

I felt like I may pass out. The room was spinning. And my immediate thought was, what the fuck did we do to him. I thought I was going to throw up.

I was prepared for him to look terrible. I was prepared for his chest to be open. I knew it would be hard seeing him in that shape. What I wasn't prepared for was the swelling. I wasn't prepared for the countless tubes of blood. And I wasn't prepared for the wind to be knocked out of me. It was everything I could do to not fall to mmy knees and sob.

Focus. Breathe. Hold it together. Don't loose it in this room.

I looked at Kevin, and his face was white.

Kilian looked so horrible. I regretted agreeing to the surgery immediately. I regretted continuing the pregnancy. I regretted every single decision we've made for him. What did we do.

It hit me like a ton of bricks, and it seems impossible that he will even make it thru the night. It's 4:03am and my chest is so tight, I just know my phone is going to ring.

They said while they had hoped to have stopped his bleeding by now, it still wasn't under control - so they were giving him a lot of blood. I choked back the tears..he was going to bleed out. He was going to die. We put him thru this for nothing, what had we done.

I stopped myself. We're asking him of so much, to be so strong. I had to do the same for him.

My hand was shaking but I put it on his little leg, the only spot that wasn't bruised, or swollen, or with some sort of IV or line.

I talked to him, barely getting words out loud enough for him to hear. I don't even know what I said. I feel bad now, like I should have said more. I just couldn't get my head to stop spinning.

I had to take a break from looking at him. It was getting harder to hold it together. I went over to pack up our things, because when I need to escape - I need to escape now. And I needed to get the hell out of there.

I knew that they were going to have their hands full with trying to keep him stable, keep him alive. I felt like we were just in the way. I walked back over to him, and with a shaky hand touched his head. Just barely, because I felt like I was going to hurt him. All I could think about was how much pain he must be in.

We stood there a little while later, my hand rubbing his leg, asked a few questions, acted like we were unwavering in the strength of holding back the emotion. But I had reached a breaking point. The escape had to happen now.

We said goodbye and headed out the door. One hallway, second hallway, third hallway..door. My first escape I saw was the elevator. Just make it there. My legs were still numb and I was convinced they were going to give out if I didn't hurry. You know those dreams where you're trying to run, but you can't move? That's exactly how it felt. Our reality was a nightmare.

One foot stepped into the elevator and the tears immediately welled up. Not yet.

Kevin is tinkering with the water pressure tank. He doesn't even know what to do with himself. We need to go lay down and put on a movie. Distraction.

It started getting harder to breathe, that door couldn't open fast enough. Almost there.

Down one hallway, down the next hallway. One long stretch of hallway before the parking ramp. Almost.

I just noticed Kevin washed all of my pump parts. I couldn't stay in that room another minute, let alone pump..so I did in the car. He always does little things like this for me when I'm having a hard time. I think I'll go plug in his phone charger for him and put in one of his favorite movies. Grab For Fox Sake Kilian and the blanket from Kilians room in the NICU, go hold both of them tight in bed.

Go hold someone that means something to you now.

That stretch of hallway to the parking ramp just doesn't end. My eyes are drowning in tears, my breathing is so choppy..Im basically gasping for air. I can't control it. Hold it together..were almost there.

Out to the parking ramp and I rip off my stupid mask, thinking it'll help me breathe. It doesn't. Up the elevator.

Im trying to run as the door opens but I'm moving slower than a snail. The car is right there but it's so far away. Unlock.

I barely get in, and immediately loose it.

Its just too much. How is anyone supposed to deal with this? I can handle anything..except this. I don't know how I'm supposed to do this. The image of my Kilian Race in all his brokenness won't leave my mind, and its tearing me to shreds.

Kevin is rubbing my back, asking me whats wrong. Is it Kilian? Is it from all the stress and emotion and exhaustion of the day? Am I ok?

No. None of this, from the very beginning, has been ok.

The destination was home, and we couldn't get here quick enough. And now that we're here, it isn't any better. I am absolutely terrified to hear my phone ring. I keep telling myself it'll be ok. Whatever happens happens...he'll be ok. I just can't shake it.

Kevin just came in to lay down. Movie is on. I'm snuggled with Kilians blanket and the grief is just overwhelming.

My heart goes out to anyone who has been thru something even remotely similar to this. I had empathy before but, walk a mile in someone else's shoes means a whole lot more when you've actually done it.

Everything up until this point was manageable. But this one is going to take everything we have, and then some. And then a lot some more.

I write these posts to achieve something. For myself, to let all this shit go. We are here. This is happening. And we must deal. But I honestly hope that it can help someone else. Maybe find strength. Maybe say hey my situation doesn't seem half bad. Maybe give insight to what their future in a similar situation looks like. I don't know maybe just to give you something to read.

I'm not asking for sympathy. I really don't want it. I know we will pull thru this, whatever the outcome. It's going to be hard, but we will do it. All I want is for people to maybe let this make them think twice..and be a little kinder to someone, not knowing what they're facing in their life. Be a little more grateful for what they have. Have a little more grace, a little more understanding, a little more faith - in whatever it is you believe in.

Kevins already sleeping. I need to try to do the same, and continue to pray that the phone doesn't ring. Im going to turn the lights off and repeatedly sing to myself -

"Que sera, sera..whatever will be will be. 

The futures not ours to see. 

Que sera, sera."